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Introduction
End-of-life decisions and the patients right to refuse treatment have always been a subject of legal and medical debates. Several precedent court cases, including the 1990 Cruzan case, emphasized the dilemma between the patients right to refuse medical treatment and the states interest in the preservation of life. Following the precedents, basic rules were established regarding an individuals end-of-life decisions and the procedures of providing palliative and recuperative care to patients. Medical professionals are strongly encouraged to make decisions with compassion and respect for patients rights and wishes and inform them about the importance of advanced health care directives.
Cruzan Case
Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990) was a landmark decision of the U.S. Supreme Court concerning life support termination of an incompetent individual. The subject of the case, Nancy Cruzan, sustained severe injuries during a car crash, which left her in a persistent vegetative state. With her brain irrevocably damaged, there was no sign that she would ever recover (Gaudin, 1991). She was kept at the hospital with hydration and nutrition tubes inserted in her body to sustain her life.
Nancys parents went to court after the hospital refused to withdraw her life support at their request. The Missouri Supreme Court ruled against the termination of treatment, requiring clear and convincing evidence that Nancy herself would have chosen to have life support removed. The court based its decision on the state interest in the preservation of life, claiming that no one is entitled to exercise another persons right to refuse medical treatment without reliable evidence. The case was passed to the U.S. Supreme Court, which, in a split 54 decision, supported the Missouri Supreme Court in its claim for evidence of the incompetent persons intentions (Gaudin, 1991). After such evidence was produced, the court order was issued to remove Nancys feeding tube, and she died 12 days after that, on December 26, 1990.
The case became one of the first right-to-die cases that raised multiple questions concerning the patients right to refuse treatment and whether this right can be exercised by a third party if a patient is incompetent. The courts decision set several important precedents for the determination of similar cases. It established that the right to die was not a right guaranteed by the Constitution, and to terminate the life of an incompetent patient, a living will, or other clear and convincing evidence of their wishes is required. Under the absence of such evidence, the states interests in preserving life outweigh the individuals rights to refuse treatment (Gaudin, 1991). The case also raised public debates on the questions of the living will and advanced health care directives, the legal aspects of withdrawing life support, and palliative care.
Life Support and Palliative Care
Life support refers to treatments deployed to sustain a patients life after the failure of one or more vital organs. With modern technology advancements, life support is now regularly used to save and prolong the life of patients who are terminally ill or seriously injured. Once the brain activity of a person stops, there is no chance of recovery, and life support only sustains the bodys basic functions, prolonging the process of dying. With a patient being unconscious and unable to exercise their will, their families and therapists are often faced with an ethical dilemma regarding the continuation or termination of treatment.
The issue of life support withdrawal has been a subject of intense discussions in the legal and medical communities. In the United States, the termination of life support is legally justified primarily by the principles of informed consent and informed refusal. They state that treatment cannot be started without the patients approval, except for emergencies, and a patient has the right to refuse all treatment, including life-sustaining interventions (Calabro et al., 2016). Although these principles are accepted on the federal level, the particular aspects and limitations of the procedure vary from state to state. In some states, if a patient is unable to exercise their will directly, the decision can be made by surrogates, while in other states, clear and convincing evidence of a patients wishes is required (Gaudin, 1991). Generally, the decision to withdraw a patients life support can be made by their physician with the patients consent, by the patient, or, in case of the patients incompetence, by their surrogates.
Withdrawal of life support does not mean the termination of care entirely. After the procedure, the patent is provided access to palliative care that is aimed to prevent and relieve the patient of suffering utilizing early identification and impeccable assessment and treatment of pain and other problems (WHO definition of palliative care, n. d., par. 1). According to the WHOs definition of palliative care, it intends to neither hasten nor postpone death, integrates both medical and psychological aspects of care, and offers a support system for both patients and their families (WHO definition of palliative care, n. d.). Palliative care is administered following the principle of respect for the patients wishes, values, goals for care, and treatment preferences.
Another choice for patients with terminal diagnoses is recuperative care, provided in hospices. It is similar to palliative care in its goals of mitigating unpleasant symptoms, controlling pain, ensuring patients comfort, and addressing psychological distress. Unlike palliative care, recuperative care primarily focuses on comfort and psychological support and is based on community involvement in inpatient care. Most medical respites are non-for-profit community-based organizations that also provide care for homeless people who need to stay in a safe environment while recovering from medical treatment. Under the Medicare Hospice Benefit, for a patient to be submitted to recuperative care, two physicians need to certify that they are terminally ill and have less than six months to live (Hospice care, n. d.). Moving to a hospice is a matter of a patients choice, and they have the right to move to palliative care under their physicians supervision.
The patients in palliative and recuperative care face many psychological and social issues, particularly regarding communication with their families, that should not be overlooked when providing care. Keeley (2017) notes that scholarly and clinical attention to communication at the end of life is imperative to improve medical, psychological, and relational outcomes for those dealing with the dying process (p. 46). The ability to freely talk with their families about what is on their minds relieves patients of stress and increases their readiness for the impending outcome. Family sessions and therapist consultations in palliative and recuperative care aim to facilitate communication between the terminally ill and family members (Keeley, 2017). A patients physician and palliative care specialists need to be involved in the process, observing the principle of respect to the patients spiritual, religious, ethical, and life values.
Death by Refusal of Treatment
A patient has the right to make a voluntary and informed decision to refuse any kind of medical treatment: preventive, curative, management, and palliative. This right is closely connected with the right to informed consent that states that a patient should only agree to medical treatment if they are provided with sufficient information about their diagnosis and treatment options. Exceptions include emergencies when immediate treatment is required to save a patients life and cases when a patient does not have a legal ability to refuse treatment. They include patients who are mentally ill, children under the age of consent, and patients whose refusal of treatment can pose a threat to the community (Calabro et al., 2016). Patients are also entitled to refuse life-sustaining treatment at the end of life, including termination of life support, even if it may lead to death (Withholding and withdrawing life-sustaining treatment, 2016). Refusal of life-sustaining treatment does not mean that a patient forfeits palliative care, aimed to relieve pain, which can be administered even for individuals who do not want to be kept alive. However, even palliative care is not administered if the patient has refused all medical care.
Death by the refusal of treatment is not considered suicide, although there have been continuing debates over the differences and resemblance between the refusal of treatment, suicide, physician-assisted suicide, euthanasia, and letting die. When a patient refuses life-sustaining treatment, they die of a natural cause. In the case of physician-assisted suicide, a doctor facilitates a patients death by providing the necessary means and/or information to enable the patient to perform the life-ending act (Physician-assisted suicide, 2016). Euthanasia is the practice of intentionally ending the life of a patient. While a patients right to refuse treatment has been consistently supported by courts, the support for physician-assisted suicide is limited, and euthanasia remains illegal throughout the United States. The APA Code of Ethics does not entirely reject the concept of physician-assisted suicide, however emphasizing that it is fundamentally incompatible with the physicians role as a healer (Physician-assisted suicide, 2016). When making a decision, health care professionals are encouraged to thoughtfully consider the consequences of their actions and act by the values of care, compassion, respect, and dignity.
Advance Health Care Directives
An advance health care directive is a legal document that specifies what actions should be taken for a persons health if they are no longer able to make decisions for themselves because of illness or injury. One type of advanced health care directive is the living will which contains instructions for treatment. Another one is the health care proxy that authorizes another person to make decisions on behalf of the patient when they are incapacitated. As stated by the AMA Code of Ethics, the process of advanced health care planning is widely recognized as a way to support patient self-determination, facilitate decision-making, and promote better care at the end of life (Advance care planning, 2011). It allows physicians to treat patients per their wishes, values, goals, and principles, even if they are not able to exercise their will.
A living will generally provide specific directives about medical treatment that a patient would and would not want to receive to prolong their life if they sustain injuries that would prevent communicating such wishes themselves. It may include decisions involving expensive procedures, or refusal from life-sustaining treatment that serves only to prolong dying (Calabro et al., 2016). A living will becomes effective when a patients primary physician decides that they are no longer able to make their own healthcare decisions. In the Cruzan case, the absence of a proper living will be required under Missouris Living Will Statute, entitled the court to refuse to terminate her life support (Gaudin, 1991). The Supreme Courts decision established that in case of an absence of a living will or other clear evidence of a patients wishes, the states interests in preserving life outweigh the individuals right to refuse treatment.
In modern health care practice, patients are strongly encouraged to make advanced health care plans, regardless of their age or health status. According to the Patient Self-Determination Act of 1990, hospitals, hospices, nursing homes, health maintenance organizations are required to provide patients with advanced information health care directives (Patient Self-Determination Act, 1990). The law does not apply to individual physicians; however, the AMA Code of Ethics strongly encourages therapists to discuss with patients their views on end-of-life treatment and explain the importance of advance health care directives (Advance care planning, 2011). End-of-life decisions should be made by a patient in consultation with their physician under the patients religious and cultural beliefs, values, and life experience.
A failure to articulate ones goals for emergency care can lead to negative financial, psychological, and medical consequences for their families and friends. The absence of a living will place a heavy burden on the patients family and can cause disagreements regarding the patients care. Family members tend to make decisions under the influence of grief and spend an excessive amount of money to prolong the life of patients who cannot recover (Keeley, 2017). The stress of having to make difficult life-and-death choices can cause various psychological and medical problems in family members. Advance health care directives are strongly recommended to patients to protect their families from stress and ensure that they would not make decisions that would contradict patients intentions.
Conclusion
End-of-life care decisions are a sensitive issue that requires careful handling and collaboration between patients, their families, and health care professionals. It is the responsibility of a patient to take care of their end-of-life wishes and protect their interests in case they become incompetent. Physicians should inform patients about all available medical options and the importance of advance health care directives, and act following the patients decisions based on the principle of respect (Withholding and withdrawing life-sustaining treatment, 2016). Dying and making life-and-death decisions is hard, but the recent advances in palliative and recuperative care and the observance of basic ethical principles can make the process less stressful both for patients and their families.
References
Advance care planning. (2011). American Medical Association.Â
Calabro, R., Naro, A., De Luca, R., Russo, M., Caccamo, L., Manuli, A., Bramanti, A., & Bramanti, P. (2016). The right to die in chronic disorders of consciousness: Can we avoid the slippery slope argument? Innovations in Clinical Neuroscience, 13(1112), pp. 1224.Â
Gaudin, A. M. (1991). Cruzan v. Director, Missouri Department of Health: To die or not to die: That is the question. Louisiana Law Review, 52(6), pp. 13061345. Web.
Hospice care. (n. d.). Medicare.Â
Keeley, M. (2017). Family communication at the end of life. Behavioral Sciences, 7(3), pp. 4551.Â
Physician-assisted suicide. (2016). American Medical Association.Â
Patient Self-Determination Act, H.R.4449 (1990).Â
Withholding or withdrawing life-sustaining treatment. (2016). American Medical Association.Â
WHO definition of palliative care. (n. d.). World Health Organization.Â
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